Monday, March 26, 2012

so when i was diagnosed with cancer, i imagined the whole process differently.

i thought it would be a 21st-century consumption. a romantic, wasting away that left you with high, flushed cheeks and glistening eyes. you entertained sympathetic visitors in your flower-filled hospital room, looking pale and thin and pretty (because, secretly, years in the fashion business made me swallow the you-can-never-be-too-rich-or-too-thin adage. i was not rich but the cancer meant i could win the thin part).

while cancer is indeed a 21st-century epidemic - and i have lots to say about women's bodies and how we are manifesting what we, as a species, have done to the planet and our psyches - it is NOT romantic.

in reality, the treatment is painful and drawn-out. and being too thin is hideous. when i was rail-thin as a witch in an arthur rackham drawing, i looked at the lush, full bodies of healthy, normal people with envy.

so they've told you that you need chemo. NOW. but no one really says what that means.

here's what chemotherapy is. it's a drug cocktail - i used to call it dry cleaning fluid mixed with battery acid - that is mixed up, often with a saline solution, to kill the cancer cells.

at memorial sloan kettering, they give you orange flash cards with the names of each drug they are going to give you. the names are usually long and somewhat unpronouceable. the cards list all the possible side-effects of each drug. i'm guessing they do something similar at every hospital.

again, it's a frightening moment. if you have the presence of mind to read that stuff straightaway, go for it. otherwise, give them to your friend or family member to ask them to make sense of it and save it for you. or put them in your bag. but do make sure they are saved because otherwise you'll never remember the names. read it yourself in a day or two when the drugs have worn off.

the thing is - even though the side-effects sound like a list of horror movie special effects - you can't really do anything about it. that's what they believe will kill your particular cancer. very rarely, they will substitute one drug for another, but it's usually only if it doesn't kill the cancer, not if the side effects are awful.

the cocktail is served to you in an i.v. so that it enters the body quicker and doesn't have to go through your stomach.

so you go to the hospital at whatever intervals are your treatment. in my case, it was once a week. if your chemo has to be given to you in a slow drip, they might need to keep you overnight. if not, you can do it in a couple of hours as an outpatient.

for an outpatient procedure, you get to the hospital a few minutes before your appointment so you can get a couple of big chairs by the window. the assistants tell you to drop off a paper at the lab. in a few minutes, the nurses call you in for your standard vitals - blood pressure, your weight, maybe a blood test for your cancer markers (if that's how they measure it) and your potassium levels (if they are affected by the chemo). if you have a cold or a flu, they might ask you to reschedule. mainly because most people who are getting chemo have compromised immune systems and you don't want to infect anyone else.

then you sit and wait. i suggest you bring a book. maybe some magazines. in my case, i would sometimes get so nervous i couldn't read. sometimes i would bring a laptop that i could watch a movie on. or best of all, i'd bring a friend and engage in some catch-up conversation or juicy gossip (if you're in the mood).

they have to mix up the cocktail fresh for you. that can take an hour or two. there are several reasons why they can't mix it in advance. the stuff is volatile and corrosive. it could eat through the bag. it could explode. it could cancel itself out.

sort of like hair dye if you've ever tried to dye your hair from a box (like china chow - there's no shame in that.)

when your chemo mix is ready, they summon you from the comfortable waiting room filled with overstuffed chairs and the coffee machine.

an assistant leads you to a place that's more standard-issue hospital.

tiled floors, fluorescent lights that make everything a little dingy and green-tinted. if you have the kind of chemo that requires you to lie down, they might take you to a room with a pretty white twin bed and lots of plants. but usually, you're sitting in a big lazy-boy type reclining chair. if you have a friend with you, s/he gets a chair, too.

all around you are other people in similar chairs, all attached to i.v.s, some working, knitting, chatting. i prefer to bring a friend with a good dark sense of humor because then you can laugh through the whole experience.

a nurse comes and attaches a catheter to your arm - this involves injecting you with an enormous looking needle. over time, this gets more complicated because chemo "exhausts" (or destroys) your veins, so they can't use the same ones over again. and they have to keep moving up your arm because otherwise the chemo medicine can leak out of the higher point and eat through your flesh. (really).

for that reason, many people choose to have a semi-permanent catheter - or port- placed in their sternum. that way, for the duration of their treatment, they don't need a new jab every time.

the port has a lot of benefits. chemo is cumulative. the doctors and nurses and orderlies will tell that to you over and over again and you won't believe it til you start to feel it. at first, you'll think you're the exception. that chemo doesn't really bother you at all. but as the chemo kicks in, and you grow weaker and thinner and more tired, you feel pain more, and a sloppy chemo nurse rooting around for a good vein can really hurt you.

on the other hand, i wanted to be able to keep swimming and doing pilates. i didn't want a plastic plug attached to my chest as a constant reminder of being sick. so i chose not to do it. on top of it all, i had convinced myself that i was not sick at all so i thought the chemo would be over too quickly.

at the same time as they plug you into the IV, they give you a small dixie cup of pills. those pills are anti-nausea medicine and steroids of one kind or another. the point of the steroids is to also counteract the nausea and the exhaustion caused by the chemotherapy drugs. since i am small and skinny, a friend told me not to take the steroids as they would eat away at my bones. so, after 6 weeks, i refused the prednisone and dealt with the nausea instead (but even with that limited dose, a bone density scan showed osteoporosis in my hips and lower spine so it's lucky i quit when i did). huge doses of ginger worked well.

they start the process by flushing your veins with a saline solution. for me, that gave me a cold rush through my arm and hands. then they plug the chemo bag into the saline bag. in my case, i had a "push" - a shot of a particular chemo drug that needed to be in my body fast. the chemo nurse would put a pillow in her lap, take my arm and shoot it into the catheter all at once.

for me, this was the worst part. it caused a surge of burning pain from my arm up and over my shoulder and a hit of nausea like the roller coaster had just dropped me a thousand feet. i usually felt the burn in my stomach as well as the ginger kicked in. i have a pretty high pain threshold and i still hated it.

after that, things get a little easier. you sit and wait for the bags of liquid to slowly move through the drip into your body. this takes a few hours. if, in the process, you have to go to the bathroom, you have to unplug your unit, roll the cord up around it and wheel it along with you to the toilet. it's usually a little difficult to get the machine over the bump at the door so i suggest you don't wait until the last minute.

eventually, it's 2 or 3 hours' later - that's why gossip and jokes are good - and they unplug you. you pick up your bags and go home. if you're taking the steroids, you feel a bit weak but it's no worse than a flu and you can usually take the subway home by yourself. if you're not, you're usually wobbly and slightly dizzy and then it's nice to take a cab or have someone drive you. you'll probably want to go straight to bed when you get home.

somewhere in the last hour of your chemo, the nurse should have delivered a small paperbag of your prescriptions that you will take when you get home. there's a tablet that is meant to neutralize the effects of the chemo drugs - the antidote - which is important to take exactly at the time you're told to do so.

then there are extra anti-nausea pills (non-steroid ones) and possibly pain and anti-anxiety medication. but keep in mind that the anti-nausea and pain stuff can quite often cause constipation (by overly relaxing your muscles so they just don't contract) so if you choose to take them, take all the laxatives they give you, too.

personally, i try to take as little as possible. you've already flooded your system with drugs and all of them have side-effects. that said, cancer treatments are awful and you need to give yourself a little love, too. whatever you do, make sure you are soothing your soul, too.

the doctors will tell you that it doesn't make a difference what you eat, but there are lots of scientific studies telling you that it does. plus, you will feel less like an invalid and more in-control if you take charge of your diet. i suggest eating kale, broccoli, cabbage, cauliflower and brussel sprouts in large quantities, raw if possible, lots of green vegetable juice, seeds, nuts and very little protein. please, please, please don't have any simple sugars or alcohol. i promise you will feel so much better. and when the chemo is over, you will recover faster.

oh - and the big question you really want to know. how long before you start looking like an alien? your hair doesn't all fall out right away. in my case, i'd had three weeks of treatment before i took a shower and found that it looked like i'd drowned a small animal in the drain. but even then, it's more like a slow shedding.

your hair falls out in patches. this can lead to unattractive results. that's why i'd recommend going to a hair dresser and getting your head shaved as soon as your hair starts falling out.

then you get a sense of the shape of your skull and whether you want to wear a wig or a hat or nothing at all.

also some people don't lose their hair. i've never met one of those people, but that's what i've heard. certain drugs don't make your hair fall out. i didn't lose my eyelashes and eyebrows until i was 10 weeks into it.

i didn't have radiation but apparently, you don't lose your hair if that's the treatment you get. i will talk to a couple of friends who had radiation and explain it later.